The first week after my surgery was spent in the ICU. I needed a lot of pain control back then and they were more than happy to accommodate me. In my narcotic stupor I clearly remember having a conversation with my body. I thanked my body for taking such good care of me for so long. I apologized to my body for not knowing how hard it had to work to keep my tumor at bay for so many years. And I told my body I was grateful that it had waited till then to let the tumor win out. I was in the best physical, emotional and spiritual health of my life to handle this devastation. (For your understanding the medical term for the mass within my spinal cord is a "cavernoma". It was essentially a ganglia of capillaries. For purposes of this Blog, I will call it a "tumor".)
I didn't realize it at first but they had a camera on me all of the time in the ICU! So the one day, my nurse came in and commented on the exercises I was doing in bed with my arms and upper body...I was trying to do some modified Rowing:). I couldn't sit up or stand up or move my legs but I could use my arms and Rowing seemed to be my best choice! That was the extent of my exercising in the hospital until I got to Good Sheperd two weeks later.
The first thing my Good Sheperd therapist did with me was an assessment. It was scary, humbling and painful. The ONLY thing I could access below my breastbone were some highly compromised abdominal muscles. My pelvis was so numb that sitting up felt like I was perched on a rock. I looked like I was 7 months pregnant and movement in my torso was almost non-existent. I was fully numb from the upper legs to the toes. My physical therapist, Julie, sat me up on the edge of a raised mat and tested my core strength by trying to push me from one side to the other asking me to stabilize using any muscles that I could find. No hands...I could do it...I found some abs somehow! Pilates had not totally left me. She was impressed which made me feel great. She wanted to know if I had worked out a lot before my surgery. So I told her-about Pilates-about my teaching and being taught. From then on everyone knew me as the Pilates Instructor.
My progress was painfully slow. One week after I arrived at Good Sheperd Julie stood me up at the parallel bars. I could not feel my feet on the ground. She put a full length mirror in front of me so that I could see that I was standing on the ground. She told me that I was ready to take some steps. I told her no way! I was terrified. We went back and forth for a minute or so until she finally asked me if I was ready. Reluctantly I shook my head yes. Trust me, there were no thoughts of Pilates as I tried this! No doubt I held my breath as I tried to move one foot then the other forward gripping the bars for support. I took three steps with each foot and then collapsed in the wheelchair. I hung my head in my hands and cried. The other patients in the therapy room clapped and yelled "Bravo". It was my birthday and I had given myself the best present I could have ever received! When I got back to my room I called Kevin and Lauren, my mom, Tom...every single one of them cried along with me!
From that moment on I began to use the walker in therapy. Julie would hold onto me as I walked and I would talk to myself...'in and up with my belly; am I centered over my hips; am I slumped; how are my shoulders; breathe"! There was not one piece of it that was automatic. They would chuckle because I would say what they were about to say. And If I missed the correction, Kevin, my son, was right there to let me know what needed to be fixed! Pilates by osmosis. He was on it!
I loved to ride the bike. My legs felt energized and I could sit and not stand to do it! Even riding the bike was a Pilates experience! I would watch my right knee roll inward as I pedaled...."Have got to fix that", I would tell Kevin. "Out of alignment." I kept thinking it...unfortunately it was many weeks before I could actually control that knee.
Speaking from my heart, I must tell you that it was incredibly devastating. Every little movement was exhausting. So many movements were unreachable. One day not long after I got to Good Sheperd I was leaving the cafeteria in my wheelchair and I decided that I wanted to bring an apple back to my room. I had to place it in my lap to bring it back since I needed my hands to wheel myself back to my room. When I got about 30ft. from my room the apple fell out of my lap. No one else was in the hallway. I looked down at it on the floor and was totally helpless. I could not even bend down to pick it up. I left it there- I didn't ring for anyone to pick it up for me. I was so angry I just left it sitting in the middle of the hallway. I wheeled back to my room and cried. So many things had been taken away from me. I was overwhelmed by the road in front of me. Working on the Cadillac or Reformer was unimaginable back then and I would only allow myself to think about it for a second. It was too terrifying and depressing. I went into emotional lockdown. I was in a war and every day was a battle.
Thankfully now I use the Reformer and Cadillac. My body knows "the work". It understands and longs for the balance of lengthening and contracting. Next week I will tell you what I am doing and I will show you some modified Pilates exercises I am trying. None of it is easy. I am still quite compromised but I am gaining strength and coordination each day.
I thank you for reading my story. Each entry helps me to heal just a little bit more!
Sending you love and gratitude, Susan
"The irony is that we attempt to disown our difficult stories to appear more whole or more acceptable, but our wholeness-even our wholeheartedness- actually depends on the integration of all of our experiences, including the falls." ~Brene Brown, Rising Strong